Where there's a Winney, there's a way: Meet @rwinney

Sep 29, 2020 | Teresa, Volunteer Mentor | @hopeful33250 | Comments (35)

Member Spotlights feature interviews with fellow Connect members. Learn more about members you’ve connected with and some you haven’t met yet. Nominate a member you think should share the spotlight.

 

TERESA: What brought you to Mayo Clinic Connect? 

@rwinney: At age 46 I began noticing impactful changes and decline in my body. At age 47 I was no longer able to work. I left my job of 26 years and applied for disability. After two years of declining health, troubleshooting and receiving a variety of diagnoses and treatments, I finally landed on small-fiber neuropathy in February of 2019. I hung my hat on this diagnosis and began researching. Small-fiber neuropathy (SFN) was unknown to me and I had been struggling to connect with anyone who had SFN and would share their knowledge and understanding and could relate to what I was experiencing. 

In May of 2019 I found Mayo Clinic Connect as I scoured the internet for neuropathy support groups. I immediately gravitated to Mayo Clinic as I had applied to be seen there earlier in the year but was unfortunately denied. Mayo Clinic had been touted as the best of the best therefore I was disappointed when I received my denial letter. Keeping a positive focus, I decided Mayo Clinic Connect was the next best thing. I’d learn as much as I could through the experiences of others and try to understand my circumstances. I tested out other medical patient forums but none held a candle to Mayo Clinic Connect. It was easy to navigate, clear to read and professionally organized.

As I dug into the neuropathy group I began realizing there was more to my symptoms than neuropathy. I advocated for myself by researching why I had such a wide range of pain and symptoms that no doctor or pain management team was recognizing. I then came across an online video by Mayo Clinic’s Dr. Sletten explaining Central Sensitization Syndrome (CSS). This was a very emotionally moving moment for me as he provided answers to my questions and, finally after 3 years of my searching, he made sense of what no one else could explain. I was accepted to Mayo Clinic’s Pain Rehabilitation Center (PRC) and was able to work with Dr. Sletten and a team of Mayo Clinic medical professionals. I was elated to think I would finally receive comprehensive care, scientific explanation and a plan designed to live a better life than I had been. 

I graduated from the PRC program in October of 2020. After gaining my footing I was back in the game and on Mayo Clinic Connect ready to support others and help them advocate for themselves. Were it not for Mayo Clinic Connect and my own personal research I would be stuck in the same confusing cycle of pain. Knowledge is power and once I learned, I was able to take healthy steps towards acceptance of my chronic conditions. Now I manage my symptoms, less opiates and other unnecessary medications, and understand how to get the most out of what I’ve been dealt.

TERESA: What motivates you to take part in the community?

@rwinney: Originally, as a member, my motivation to take part in the Mayo Clinic Connect community stemmed from my desire to go beyond the textbooks, doctors and internet to learn about my conditions. The information I obtained from others sharing on Mayo Clinic Connect helped me better understand and learn new possibilities for pain relief. Beyond the medical aspect, I immediately felt welcomed by mentors, moderators, and community members. I felt a strong sense of compassion, empathy and support. 

As I engaged, it became clear that Mayo Clinic Connect was the community for me. It filled voids from my loss of job and no longer having direction or structure, to providing human connection and support from those who "got it." Mayo Clinic Connect not only gave me a platform to learn and educate myself on my own health issues, but also allowed me to give back by helping others through my experiences. I have always had a passion for helping others so I began to feel right at home.

Since graduating from PRC I have humbly accepted the role of volunteer mentor. My relationship with the Mayo Clinic Connect community has come full circle and I could not be more proud to share space with fellow mentors and members whom I’ve admired along the way. I take pride in paying it forward and hope to inspire and help others who may feel lost and confused about permanent health changes in their life.

TERESA: What about Mayo Clinic Connect makes you feel comfortable to share and to be open with the community?  

@rwinney: It took me time to feel comfortable sharing on Mayo Clinic Connect. When I first came, I sat back and observed for a while. I did some research by reading posts of other members and navigating around different discussions and topics. I liked the fact that there were moderators on the site and on occasion I would see them step up and remind members of the community’s guidelines. This made me feel comfortable. I knew that it wasn't a free-for-all site, but one that was supervised and held accountable. 

In due time I realized that others were safely sharing their experiences, trials and tribulations, and I eventually felt a kinship with these folks and felt comfortable sharing mine. You feel like you are connected by sharing common experiences. After you feel that connection and realize you can help others too, it’s very gratifying.

TERESA: What groups do you participate in?  

@rwinney: My main focus is the Chronic Pain group but occasionally I will pop in to the Neuropathy, Eye Conditions, Brain & Nervous System groups.

TERESA: Tell us about a meaningful moment on Mayo Clinic Connect. 

@rwinney: Wow, I've had a good number of meaningful moments. There was a time that I struggled mentally with taking certain medications for pain. @artscaping  was there with her unique approach and kindness which inspired me on my worse days. She has become a special friend. 

@johnbishop never ceases to amaze with his tenacious research endeavors which help so many members. He comes through in a big way by offering reputable medical site links and valuable information – priceless.

I've also shared my journey of being diagnosed with the corneal disease Fuchs dystrophy. Having cornea transplants and cataract surgeries at age 43 gave me a leg up to help others who are experiencing the same eye conditions. I love helping ease  members’ fears of the unknown, and if I help in any way at all, then my mission is accomplished.

TERESA: What surprised you the most about Mayo Clinic Connect?  

@rwinney: The level of sincerity. I have been amazed to see the commitment of mentors who volunteer on Mayo Clinic Connect. These folks are truly dedicated to serving others. And the many members who have stayed with the community are impressive too. It speaks to the quality of Mayo Clinic Connect. I think we all conclude that sharing and helping is a way for us to turn our own negatives into positives.

TERESA: What energizes you, or how do you find balance in your life?  

@rwinney: My children definitely energize me. My son is 28 and getting married in October, after two delays due to the COVID pandemic. He has a beautiful home and two German shepherds which I love to visit.

My daughter is 20 and attending an incredible college. She is flourishing as she discovers herself and her future path of sociology, education and working with disabled children. She is also actively involved with undoing racism and promoting inclusion.

I'm beyond proud of my children. They bring me distraction, undeniable joy and motivation.

Since attending Mayo Clinic’s Pain Rehab Center I have learned so much about myself. I was able to regroup my perspective on chronic pain, life and who I am. I now balance my days by scheduling morning stretches, physical therapy, cardio, rest breaks, breathing, distraction, meals, self care, and even Mayo Clinic Connect time. This has helped me greatly to not push and crash, and over do. I recognize the importance of moderation, and how it helps me be the best I can be.

TERESA: Tell us about your favorite pastime or activity.

@rwinney: I love interior and exterior design. I take pride in my home by refreshing the decor and being attentive to my landscaping. I enjoy summer and love planting and watching my flowers and trees grow. I take a lot of pictures too. I like to capture my flowers and the lush greenery of summer. Nature is healing. I’ve learned how to modify things like planting so I’m able to better accomplish at a comfortable level. Granted my abilities have become limited but, "Where there's a Winney, there's a way." LOL! This is our family motto. I may need help doing something, or may not be able to do it at all, but somehow, some way, it happens! This is where I must give props to my wonderful family for supporting and helping me.

TERESA: Do you have a favorite quote, life motto or personal mantra?  

@rwinney: The aforementioned family motto of course. "Where there's a Winney, there's a way.

And I’ll throw in a Dolly Parton quote: “We cannot direct the wind, but we can adjust the sails.

Coming to acceptance and realization of this quote was powerful for me. I refer to it on difficult days knowing to never give up and always be flexible.

TERESA: What food can you simply not resist? 

@rwinney: I have a soft spot for bread...warm with butter. Mmm, mmm, mmm.

TERESA: If Hollywood made a movie about your life, who would you like to see cast as you?

@rwinney: Well, considering a teenager once told my daughter that I looked like Dolly Parton (hair wise I suppose) I'll go with Dolly! She's a beautiful, kind soul. Unfortunately, I can't sing a lick so her talent would be wasted. 

My backup could be a young, vibrant Farrah Fawcett. Oh how my husband would love that! 

TERESA: What do you love about where you live or vacation?

@rwinney: I love Ocean City, Maryland. We created family memories to last a lifetime there and it holds a special place in my heart. I do hope to re-explore Ocean City one day even though my children are grown. Perhaps with grandbabies! My capacity will have changed in going but, I'll still make the most with what I have. That is my long term goal.

TERESA: Puppies or kittens?  

@rwinney: Puppies all day! I have a beautiful Shepherd-Husky mix named Kona who is 13 years old. She is my loyal companion, especially since I “retired” early. We hang out and have a pretty solid routine together.

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@rwinney Thank you so much for the opportunity to interview you for this Spotlight! It was a pleasure getting to know you better. You have great persistence and tenacity in finding answers to your health problems and I'm glad that we can share your journey (and your caring heart) with others.

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@hopeful33250

@rwinney Thank you so much for the opportunity to interview you for this Spotlight! It was a pleasure getting to know you better. You have great persistence and tenacity in finding answers to your health problems and I'm glad that we can share your journey (and your caring heart) with others.

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@hopeful33250 Thank you for your kind words Teresa. It was truly my pleasure to work with you and be recognized in Mayo's Spotlight feature. I am grateful for the nomination and humbled to join the ranks of so many incredible people. What a wonderful place to be! 😊

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@rwinney Oh Rachel, Rachel, Rachel, Totally loved reading all about you. And what a gorgeous head of hair!!!!! It was just a pleasure to read about you, and I so appreciate all that you have shared!!!! What is going on with your trip to Mayo? Is it still going on with this Covid? Love to you, Lori

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@rwinney I'm glad to get to know you more I knew when we met on connect what s warm soul you are Nice interview Theresa

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@lorirenee1

@rwinney Oh Rachel, Rachel, Rachel, Totally loved reading all about you. And what a gorgeous head of hair!!!!! It was just a pleasure to read about you, and I so appreciate all that you have shared!!!! What is going on with your trip to Mayo? Is it still going on with this Covid? Love to you, Lori

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@lorirenee1 Thanks so much Lori! Yes ma'am, I leave this Sunday and begin the Mayo PRC – pain rehabilitation clinic. It is a 3 week program, Monday through Friday. My plan is to create a new topic and share by posting updates about my experiences and offer information about the program (as I'm able). I hope you are as well as well can be and your DRG continues to provide a portion of your pain relief. My best wishes.
Rachel

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@lioness

@rwinney I'm glad to get to know you more I knew when we met on connect what s warm soul you are Nice interview Theresa

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@lioness Back at ya Linda! Thank you very much.
Best to you,
Rachel

PS: I enjoyed reading your Spotlight as well!

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Rachel @rwinney – Thank you for letting us get to know you a little better! Hoping to hear some great news when you return from the Pain Rehabilitation Center. Happy Friday and have a great weekend!!

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@lioness

@rwinney I'm glad to get to know you more I knew when we met on connect what s warm soul you are Nice interview Theresa

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@rwinney I didn't realize Monday your going to Mayo Looks like you may meet Sunny flower there she is leaving also for Mayo and pain clinic Please let us know what you find out my pain was a 15 yesterday if it would have existed. Rachel have a good educational time Linda

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@rwinney

@lorirenee1 Thanks so much Lori! Yes ma'am, I leave this Sunday and begin the Mayo PRC – pain rehabilitation clinic. It is a 3 week program, Monday through Friday. My plan is to create a new topic and share by posting updates about my experiences and offer information about the program (as I'm able). I hope you are as well as well can be and your DRG continues to provide a portion of your pain relief. My best wishes.
Rachel

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So my SFN friend and colleague, I so wish you well. Absorb and Experience first, then Evaluate your capability to benefit.

We just got an assignment in our Sanga last night.

May you be free of suffering. We are making a list of the mental and physical sufferings we currently contend with.
May you have happiness. Now make a list of the things that bring happiness into your life.

I am still stuck on sufferings.

You are a shining star. Genuine and accepting without judgment of the person.

May you be healthy and whole.

My best Rachel. Someday we will talk about bread and interior design and all the new things I am learning about you.

Chris

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@johnbishop

Rachel @rwinney – Thank you for letting us get to know you a little better! Hoping to hear some great news when you return from the Pain Rehabilitation Center. Happy Friday and have a great weekend!!

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@johnbishop Thank you John! You too.
Best to you always,
Rachel

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@rwinney

@johnbishop Thank you John! You too.
Best to you always,
Rachel

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@rwinney
Great interview Rachel, you are a sweet and lovely person who I am so glad to have gotten to know. Looking forward to many future interactions and discussions with you right here on Connect. Best always, Hank

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@jesfactsmon Thank you my friend, as am I.
Mu best to you and Linda,
Rachel

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